hi,live been on Anastrozole since May 2017. I had hormone receptive BC, chemo, double mastectomy and oopherectomy (also BRACA2 ). I've been having a lot of side effects which I put down to Anastrozole: confusion, weight gain, lethargy, fractured ankle,joint pain and stiffness, as well as bouts of depression. I'm considering speaking to my oncologist about changing to Tamoxifen. I'm just wondering if anyone has had similar issues on Anastrozole and if you changed to Tamoxifen? Any advice would be appreciated.

@Lallaby its about 5%, whilst that doesn't seem much, trust me after having a recurrence even after being on tamoxifen for 4yrs, I wasnt going to argue with a new med Arimidex or Aromasin. So it comes back to how much an individual is prepared to do to stop a recurrence. Im massively into alternate therapies BUT nothing replaces medicine, they are used in conjunction together, thats the point and unfortunately most people miss the point. How you feel about hormone therapy is how I felt about chemo...should I or shouldn't I, was quite the quandary for me. My Oncologist couldnt predict either way. All of its a gamble you'll never know what works or doesn't. So I realized it came back to feeling comfortable that you had done all you possibly could to make sure that it didn't come back.x Melinda

Oh dear, @Afraser, please forgive me, I didn't mean to imply you are an old crone. Sorry, sorry. Actually you are a real inspiration, you seem to have come through everything so well. And yes, everyone is different and responds differently. I guess I am still early on in this process and am constantly surprised that there isn't more definitively known about why these differences exist, and what will happen in any particular case. People say over and again that you have to make your own decisions and trust your own instincts but how do you know what to base those decisions on? When speaking to my onco for the first time he mentioned side effects from AI therapy but implied these were rare and other than bone loss would not have any great impact on my health or everyday life. He spoke about it as a simple drug with great results. As he is a highly recognised researcher and well-known in the field, I of course took this at face value. Only after I started reading story after story on blog after blog and forum after forum about the ghastly condition so many women were in did I ask more questions about it. I feel I understand it now (hence the long rave above, for which I apologise) but I still want to know why some women sail through it and others are virtually crippled. In my case, because my cancer was already so advanced and so close to potential mets, it is clear that if I don't take AI therapy I will be in major trouble. This has thrown me into a state of obsession again and I can't stop thinking about it, even though I desperately want something else in my life. Sorry if I overstate things sometimes but I guess I just can't believe half of what I am finding out!

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It is hard there are no easy answers, with Arimidex or the like, as I had a recurrence already I wasnt going to risk another, so a year after treatment opted for a single mastectomy/diep flap recon, Im nearly a year on from that too. Chemo also gave me the wonderful gift not just for menopause but osteoporosis in my neck and lower back HAHA! I take Prolia injections every 6 months. All going well in March with a bone density scan he said he will push me back to yearly checkups. It really has taken me 2yrs to recover from chemo and taking the AI, Ive just started a new job 5 days in education, it is bloody hard because nobody understands. So I just plod along as best I can to the day I can stop taking it or they come up with something better. Chemo is a beast...I wouldnt choose it again knowing the hard road I've had because of it. x

Being thrown suddenly into menopause does take time to adjust. I didn't feel myself for around 2years during peri-menopause. It got better.I was very worried when starting letrozole it would be like that again. It felt no different. Mental recovery from breast cancer isn't easy. I got really depressed from chemo and the length of time to get my energy back and brain working on all cylinders has taken 12months.I did have really stiff ankles feet and wrists. That has definetly improved over months and I just have some morning ankle stiffness now. Exercise really helped. It lifts the mood. Improves brain finctioning and loosens up those joints. I only have issues now if sitting around too much (as well as my arthritic back then seizing )So ...it could be a combo of things. But worth discussing with your onco. Kath x

Anastrozole | BCNA Online Network

72 Replies

kmakm
Member
8 years ago
@Joannie Oh we'll spot each other easily... 'cos I do too! ;) ;) ;)
Anonymous
Not applicable
8 years ago
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kmakm
Member
8 years ago
@Romla @Joannie You women are on fire tonight!

As I ride this rollercoaster, which tbh for me has been mostly the downs so far, I do remind myself that it's better to be here and doing my darndest to survive, unlike so many others, including my sister and sister-in-law. The pulse is the thing. I wonder if I'll ever feel ownership of the term 'survivor'. A secret handshake and a jewelled pin (NOT pink) would most definitely help!
Anonymous
Not applicable
8 years ago
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Romla
Member
8 years ago
As odd as it sounds it lifts me a lot to know a group of women in my town are breast cancer survivors - it’s a buzz to see them out and about shopping/ having coffee etc just doing normal life and enjoying it
Anonymous
Not applicable
8 years ago
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Romla
Member
8 years ago
Maybe an idea for BCNA ?
Romla
Member
8 years ago
@kmakm wonder if any of the creatives out then could design something like a pin which is a secret signal to fellow bc people that one has made it thru ?
kmakm
Member
8 years ago
@melclarity You are a wonder. I salute you!

@JanineG I am about to start on Anastrozole for seven years (and yes, frightened). Which makes my end date May 2025. I bloody love your jewellery plan!! I think I'll do the same thing!
JanineG
Member
8 years ago
Beautifully worded @Afraser Thank you.
@JodieAnne I started on tamoxifen for my hormone positive bc, but after 8 months decided it didn't suit me. I felt foggy and progressively would lose my words mid sentence. I had random nasty joint pain and mild stiffness.So I changed to Arimidex and feel mentally completely my self. Like a fog cleared. I do have terrible stiffness occasional joint pain and now osteoporosis. All of which I manage daily. I have definitely put on weight as I don't exercise enough !
I will continue for at least 5 years. I'm almost 53. The choice for me was easy against the risk of recurrence I felt I needed to try everything.Such a personal decision and very easy to be frightened. If it helps I met a lady recently who had finished 5 years on arimidex in January and said already she has very little side effects left. I look forward to October 2020 and I will celebrate with jewellery

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Anastrozole

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